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    When cancer strikes a family: Psychosocial issues in pediatric oncology

    A child’s cancer diagnosis affects his or her entire family, and presents psychosocial issues that the community pediatrician needs to assess and treat for the total well-being of the child, siblings, and parents.

     

    Similarly, parents feel that providers are not always cognizant of the impact of care plans on the healthy sibling.10 Parents indicate that hospital system interventions to address these issues are not begun until problems are raised to a crisis level.

    Parents may be suffering from psychosocial distress such as distress or exhaustion and it may not be readily apparent to their care team. Additionally, parents report feeling that the healthcare team sets unrealistic expectations of them that leads to decreased engagement with the team in the care of their child.10

    Recommended: Tackling health literacy in diverse populations

    Finally, some of the psychosocial impacts may be delayed as the pediatric patient transitions out of a pediatric practice into adulthood.

    For example, pediatric patients report significant worry and distress in a number of areas related to future parenting, relationships and fertility:12

    ·      Thoughts of infertility triggered by a friend having a child.

    ·      Not knowing if they are infertile.

    ·      Conflict between information given to patients by their pediatric doctor and their new adult doctor (e.g. Being told you might be able to have children when you had assumed you could not).

    ·      Disclosing infertility or potential to a partner relationship.

    ·      Risk of passing cancer genes to offspring

    ·      Impact of cancer on the ability to parent.

    ·      Possible early death if cancer recurs.

    What can the pediatric practice do?

    1. Assess patients for psychosocial distress. While many pediatricians may feel assessing for psychosocial distress among the patient, parent or siblings more appropriately falls into the domain of the oncologist, the psychosocial assessment tool (PAT)13,14 and the distress thermometer (DT)15,16 are evidenced based screening tools assessing domains such as family resources, family problems, social support, child and sibling problems. While potentially time consuming, screening is essential to identifying potential issues. The first year after a diagnosis is the highest risk for distress, but a number of different factors contribute to increasing distress of patients, families, and siblings impacted by pediatric cancer.1

    2. Create opportunities to surface problems. Because much of parental distress may not be shared or be directly evident, pediatricians should directly ask parents about economic and caregiving demands or desire for support in children with cancer.

    Just as parents are available and supportive for their children, the pediatrician needs to create an environment where parents can share their thoughts, fears and concerns without judgement. The pediatrician should listen as much for what is unsaid as what is unspoken. The pediatrician can reframe family issues in the context what other families have been through may decrease stress. Instead of "doing for" parents, strategize and plan with parents to build on their capabilities to effectively parent the entire family.10

    Make referrals to appropriate support professionals that can help parents address both instrumental and relational needs. Develop resource materials for helping parents to access support groups, church communities or other peer support.

    3. Journaling. While there is limited evidence to support journaling as a complementary treatment in pediatrics, there is evidence for is support in the adult literature. Expressive writing has been associated with improved wound healing and immune function in adults, as well as decreased hospital visits in a variety of chronic conditions.17,18 In adult breast cancer patients expressive writing reduced visits for cancer related morbidities and decreases physical symptoms.19

    If thought of as a self-administered treatment, journaling can easily and inexpensively be administered to pediatric patients and their families. There is also some evidence that these treatments may be as effective as traditional therapy.20 The pediatrician might think of journaling as a preventative psychologic support and encouraged at diagnosis before any psychosocial dysfunction develops.21 It may help fill gaps given a shortage of mental health and psychologic support services available in many communities as well as improving communication and allowing the child with cancer a more active role in their treatment.

    NEXT: Taking the development approach

    Pat F Bass III, MD, MS, MPH
    Dr Bass is Chief Medical Information officer and professor of Medicine and of Pediatrics, Louisiana State University Health Sciences ...

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